December 19, 2014

Your life is going well.  You have a great husband and marriage, furkids who bring you great joy, a loving family, wonderful friends, a job you love with people who are awesome, a career which is mentally and emotionally fulfilling, and volunteer work which keeps your heart full.  Your life is active, busy and you love it.

You do what you’re supposed to do, for the most part, to maintain your health.  You get an annual mammogram, and you are asked to return for more views.  It’s okay, the same thing happened last year and everything was fine.  It’s that darn dense breast tissue that causes problems.  So you go back for more views.  More views are taken, the radiologist views them.  You’re told that an ultrasound is needed.  The ultrasound is done, the technician tells you the radiologist wants to talk to you.

She tells you that a lump was found on your right breast which wasn’t there last year.  It’s irregular in shape, she says, and suggests a needle biopsy.  She can do it right now, if you like.  You opt to have it done, and then wait for the results.

Five days later, you get the call.  It’s cancer.

Since that call, my life has been turned upside down.  It’s been a whirlwind of appointments, tests, examinations, and decisions to be made.  It’s also been a time of even more tests, more waiting for results so more decisions can be made.  Here’s what I know.

The lump is 1.93 cm at its largest.  The cancer is invasive ductal carcinoma, which means the cancer is not contained in the milk duct, but has started to “leak out.”  The grade, or the “score” which indicates how different the cancer cells’ appearance and growth patterns are from those of normal, healthy, breast cells,  is a 2+ (out of 3).  This means the cells are moderately differentiated; they do not look like normal cells and are growing and dividing a little faster than normal.  It’s an indicator that the prognosis is intermediate.

Breast cancer treatment is designed for the long view – focused on minimizing recurrence.  It starts with surgery to remove the tumor and the sentinel lymph node.  These will be examined to find out more definitively about my cancer.  How far has it spread?  Can the surgeon get clear margins after removal of the tumor?  Once the final pathology is done on the tumor and lymph node(s), then the cancer is given a stage.

After surgery, the treatment to reduce the chance of recurrence starts.

My cancer is estrogen and progesterone receptor negative.  Some cancers are fueled by the hormones estrogen and progesterone, and if so, can be treated with hormone therapy.  One could say that being negative in this case isn’t good, because it means that I will need chemotherapy rather than hormone therapy.  On the other hand, hormone therapy continues for five years, so I’m choosing to think of this as a positive.

HER2 (human epidermal growth factor 2) is a protein; some breast cancers (1 in 4) make too much of this protein and therefore have too many HER2 receptors at the cell surface.  With too many receptors, the cancer cells grow too much too fast.  One treatment (Herceptin) is to block the receptors so the cells don’t pick up the growth signals.  My cancer is HER2 positive.  While a HER2 positive cancer is aggressive, my medical oncologist (Dr. Priya) assures me that chemotherapy is especially effective on rapidly dividing cells.

What’s next?  Because I have dense breast tissue, and because not everything can be seen via mammography and/or ultrasound,  I’m  having a breast MRI on Monday (12/22/14).  I’m also having a biopsy done on my left breast on Christmas Eve; upon exam, my surgeon (Dr. Ching) found what she believes to be a benign fatty tumor on the left breast, but she wants to be absolutely sure.  Then I have a consult with a plastic surgeon to discuss reconstruction options, which are done right after Dr. Ching removes the tumor and lymph node(s).  Surgery will be scheduled; recovery will take 4-6 weeks.  Chemotherapy starts after recovery; I’ll have 2 types.  The regimen to address my hormone receptor negative status is an infusion once every 3 weeks for 4 cycles (12 weeks); Herceptin can start as the same time as the other chemo, but that’s once a week for 52 weeks.  Yep, 52 weeks.  An entire year.  And then sometime I’ll have radiation.

I’ve told my family, and of course they’re very supportive.  My sister and niece have come with me to my appointments – breast cancer educator, breast surgeon, medical oncologist – and I’ve started to tell friends.  I’ll wait to tell my staff until I know the date of my surgery, but it seems likely that I’ll be home recovering from surgery for 3-4 weeks.  It could be that the surgery is more extensive, depending on what the MRI shows, on what the left breast biopsy shows, on what the surgeon finds when she excises the tumor.  If you’re uncomfortable with uncertainty, this is not a good time.

[This blog post is the “front page” – all other posts are in reverse chronological order, so if this is your first time here, scroll to the bottom and read up.]

 

One Year Down

It’s been 8 months since my last post, but that’s not because things haven’t been happening, both on the medical front and otherwise.

The biggest change these past months is that I am not working. I took the next couple of months off, and then headed to Australia in mid-November, where I was chairing a conference. My husband joined me and we spent almost 3 weeks vacationing Down Under. If going to Australia is on your bucket list, GO. A beautiful country with so much to see, with friendly people and great food. We can’t wait to go back.

As soon as we got back from Australia, I had my port removed – finally.  After having it in for almost 2 years, my body had started to integrate it and it was very difficult to remove. I was sore for a few weeks from all the cutting that needed to be done. Now I have a pretty nasty keloid scar, which occasionally itches and is just generally annoying. I’m thinking of getting my first first tattoo in and around it, just because. What to get….

Since the new year, aside from looking for work, I’ve been busy with volunteer work and trying deal with other ongoing issues from my cancer treatment. Yep, still have diarrhea and take 2 Imodium every night. Yep, still have neuropathy in my feet. Yep, have curly hair – and less of it, too. The muscle aches in my knees are better, and I wonder if it’s because my magnesium is more “normal.” Apparently drinking soda can be a cause for low magnesium, and since I haven’t been working, I’m drinking a lot less Diet Coke. I used to drink 1-3 Diet Cokes by noon, mostly due to stress. My ankle, for which I was getting PT in the fall, is good, and my shoulder is slowly getting full range of motion back. I can finally zip up a dress…with difficulty, but I can do it.

My last chemo treatment was May 6, 2016, and so much has changed since then. Well, really, so much has changed since my diagnosis in December 2014. I had my annual diagnostic mammogram in March (I can never have just a screening mammogram), and it was normal. I continue to see my oncologist every 3 months and my breast surgeon every 6 months. I’ve put on weight because for so long I didn’t care what I ate as long as I could keep it down.  That habit plus not working resulted in the extra pounds, which I need to lose. All in all, though, I’m fairly lucky:  I am feeling well, I have a great support system, I have medical insurance, and my prognosis is good. Life could be worse.

 

Same Old, Same Old…sort of

A lot has happened since my last post, starting with my last infusion of Herceptin on May 6, 2016.  Time to celebrate!

It’s great to hit that milestone, and the clock starts ticking now towards being “cancer free.”  I was aggrieved to learn that the counting doesn’t start until one is all done with everything – chemo, radiation, surgery…so for me that’s May 2016.  So I can’t say I’m cancer free until May 2021!  Oy.

Despite being done with Herceptin, I haven’t had my port removed yet because I continue to need magnesium.  Only once, in May, was my level 1.7; otherwise, my level remains stubbornly at 1.5.  So every 3-4 weeks, when I’d need a port flush anyway, I go in and get some magnesium, usually 2 grams. At my last visit with Dr. P, she wants me to keep my port for at least another 3 months. She wants to make sure my level doesn’t go down, and if it remains steady at 1.5, then I guess we’ll assume that’s my “normal” level. I’m still taking 800 mg a day orally, so it’s pretty amazing that the level hasn’t changed all that much.

A side effect of taking magnesium orally is diarrhea, my old nemesis. I continue to take 2 Imodium every night, and still have diarrhea at least 3-4 times a week.  I still have neuropathy in my feet, but I think it’s slowly getting better. The muscle aches have gotten better, although not gone completely.

I recently had my 6 month checkup with Dr. W, my plastic surgeon, and he says everything looks great. I’m certainly happy with the results of the reconstruction. He says the scars will fade over time. I asked him whether I’d have ptotic breasts again, and he said while it’s possible, he doesn’t think it’s likely. After all, there’s simply less tissue (I lost a breast and cup size in the reconstruction). I guess that’s finally something to be happy about from all this!

As if my body hasn’t been through enough, I had shoulder surgery in July. Pure genetics: I had the same surgery on my other shoulder 5 years ago. My AC joint needed more space, so the surgery is to shave off part of the clavicle to create more space in the joint compartment. I got my range of motion back almost immediately this time, so I’m going to physical therapy to strengthen the muscles.

An unintended consequence of physical therapy was that my ankle started acting up.  I broke both bones in this ankle in 25 years ago, and so I thought the pain might be related to that. The MRI showed no structural damage, though, so the orthopedist ordered physical therapy. Yep, I go to PT 3 days a week! After 5 sessions of PT for my ankle, though, I think that my muscles were really tight from disuse. After all, for 18 months I didn’t have the energy to do anything much. So ankle PT has been to stretch and strengthen leg and calf muscles, and the pain is definitely much less.

The real wake up call though, was last week. I had my 6 month checkup with Dr. C, my breast cancer surgeon…and she found a mass. She thought it might be scar tissue, but wanted to make sure that’s what it was.So I had an ultrasound, and the radiologist suggested a biopsy. I thought, “here we go again.” She also wanted a mammogram to compare with the one I had in March. She put a marker in place just in case.

Fortunately I didn’t have to wait too long for the results – the mass was scar tissue – or in clinical terms “fat necrosis.” I was so relieved to get the news, but this whole incident just reminded me that my journey isn’t over…not by a long shot. It was a stark reminder that no matter how well I feel, how much I might feel like “me,” my cancer diagnosis will never, ever go away.

Almost Done – May 4, 2016

I can hardly believe it…but I’m almost done with Herceptin treatments.  17 months of chemotherapy:  while the last few months have been a piece of cake compared to the early treatments I wouldn’t wish chemo on my worst enemy.  Chemo, quite frankly, sucks.  It changes one’s body in unimaginable ways.  And I didn’t even have the worst side effects – for example, I never had taste changes or mouth sores.  I still lost 15 pounds, but it wasn’t because I couldn’t eat.  I could eat, I just couldn’t keep anything down.

A few weeks ago I had an odd pain on the side of my right breast. Fortunately I had an appointment with Dr. P the next day and I told her about it. She did an exam, and ruled out lymphedema. She poked around my shoulder and thought I might be getting bursitis. She suggested that I see my PCP. The next day during my infusion the chemo nurses asked if I had any pain (they ask every time) and I told them about the discussion I’d had with Dr. P. They suggested that I try acupuncture. I said sure, and remarkably, it’s covered by insurance! Last Friday I had my first session. It’s a bit odd, I don’t mind saying. To look over and see needles sticking out of my shoulder, arm and hand…I don’t know if it was all in my mind, but it felt like my shoulder was cooling down. I have 5 more sessions scheduled; the pain in my breast has pretty much disappeared but I still have some pain in my shoulder, so I’m hoping the additional sessions will help.

Otherwise nothing much else has changed. I still have neuropathy in my feet (wrinkled socks!); I have diarrhea at least 3-4 times a week despite the fact that I take 2 Imodium every night. And I still have muscle aches and headaches. My magnesium level today was 1.7 – tantalizingly close to the 1.8 “normal” amount. I guess I’ll still get magnesium on Friday along with Herceptin, but what else is new?

 

Inching Closer to Last Treatment – April 9, 2016

I had my 3rd to last Herceptin treatment on Good Friday.  While the chemo treatment is usually 3-4 hours, I’ve been taking the entire day off and getting other things done.  This past time was breakfast with my former boss, a trip to the Post Office, a contact lens fitting, a diagnostic mammogram, and THEN chemo.

While Herceptin is a lot less hard on the body than “regular” chemo, I continue to have side effects.  I should have bought stock in Imodium when all this started; I take 2 every night and on some days I take more as needed.  I take Advil for headaches and muscle aches, and added Vitamin D to my regimen to help with muscle aches.  I get stomach cramps, intestinal cramps and the occasional nausea, but nothing is as bad as last year. It’s all sort of manageable.

I still have neuropathy, especially in my feet.  A friend described it perfectly – it’s like I’m wearing wrinkled socks all the time.  In my hands it’s not so bad, but with my feet it can make me a little unsteady at times.  Often upon standing from a sitting position, I have to make sure my feet are truly under me, and coupled with my muscle aches, I have to take a minute before I can actually move.  The neuropathy is still from last year’s chemo; the chemo I’m receiving now shouldn’t be contributing to the problem.  Given that it’s been 9 months since my last general chemo infusion, I’m getting a little concerned that I’ll always been wearing wrinkled socks.

I’ve been spending a lot of time lately reflecting:  reflecting on my work life and my volunteer life.  I think I’ve said before in this blog that life is too short, and while I’ve always had that philosophy, having cancer really reinforces this for me.  And so I’m practicing what I preach.  I resigned from a volunteer position I loved because I discovered that the founders, while perhaps not doing anything strictly illegal, are skirting the line of law, and are most certainly unethical.  It’s disappointing to realize that one’s been duped for 3 years by 2 of the most unethical people I’ve ever had the displeasure to know.  I have to keep reminding myself that I was a part of a lot of good done in those 3 years, but life is too short to spend working for people I can’t respect.

As for work, I’ve been reflecting on that, too – what makes me happy, what doesn’t.  No job is perfect, but some things are easier to let go than others.  I’m trying to decide how much I can let go and what I can’t.  Life IS too short – too short to be unfulfilled or unhappy whether working professionally or as a volunteer.  Life also goes on, and that’s a very good thing.

 

Birthday Week Reflections

It was my birthday on Sunday. I’ve always liked birthdays, but after a cancer diagnosis, I think one appreciates a birthday just a little more. After all, I’m still here, and I’m feeling pretty good.  I remember last year I was determined to have cake (I love cake), even though I knew I would throw it up, I wanted to eat cake. This year I didn’t make Ted make me a cake, but I was lucky enough to get home made brownies and coconut pyramids. Yes, I’ve put back on all the weight I lost in the past year. All in one week. 🙂

I continue to get Herceptin every three weeks. I asked Dr. P yesterday what is the exact date of my last Herceptin infusion, and it’s May 6! That means that I have only 3 more treatments. Inconceivable! Yes, I do believe I’m going to make a sign that says “Last Chemo Session” and have a picture taken with it. Everyone is welcome to come with me to my infusion and help me celebrate!

Well, at least it will be my last chemo infusion. My magnesium continues to be low. While Dr. P thinks it’s due to the Herceptin, she will probably continue to monitor it, and I may receive magnesium infusions for a while yet. My level is slowly creeping up – for the longest time it was 1.4; 3 weeks ago it was 1.5 and yesterday it was 1.6. (Standard range is 1.8-2.4)  Dr. P would like me to take more orally; I currently take 800 mg and I’m going to try taking 1200. It’s a balance, because taking oral magnesium causes diarrhea, and I still have a problem with that from the Herceptin. The low magnesium could also be causing the muscle/joint pain I have. I’ll just be glad when all this is behind me and the joint pain I have is the “normal” pain I have from having had 4 knee surgeries.

I’ve said for a long time that “Life is too short.” Now more than ever, as I look back on the past year, life is too short. Take time to tell those close to you that you love them, and tell them often. Hug your kids, furry or not. Don’t sweat the small stuff. Don’t stay in a bad situation – whether it’s a bad relationship, lousy job, or unfulfilling volunteer work. Do what makes you happy. Because you can’t take life for granted, and life is too short.

 

 

A Year Ago Today – January 29, 2016

A year ago today I had my first chemo infusion.  Little did I know that day what my year would be like.  It’s a little surreal to think about all that’s happened.

After last week’s infusion, I stopped to talk to a young woman who was just starting her chemo treatments.  She and her family had a lot of questions, which I hope I was able to answer.  What I found interesting was that I’ve actually forgotten the names of my chemo drugs, except for Taxotere, Perjeta and Herceptin.  I had to look them up to remember what I got and when.  Honestly, I don’t think I’d wish chemo on my worst enemy.  And I don’t think I had it as bad as some folks.

It’s been a while since my last post!  The holidays were nice; my whole family was able to gather for Christmas Eve.  Our dryer broke (it’s okay, it was over 25 years old) so we ordered a new one, but that meant cleaning out a path in the garage so it could be delivered and installed.  That took up much of what free time we had over the holidays. And then we left for Anaheim and the Rose Bowl – a little vacation with friends.  We went to California Great Adventure, Disneyland, and, of course, the Rose Bowl, where my beloved Cardinal destroyed the Iowa Hawkeyes to win its 2nd Rose Bowl in 4 years.  We drove back on the 3rd, and when we got home, I was feeling off.  I thought it was just the busy vacation.  I took the morning off and then headed for chemo on the 4th.  I was running a little fever, 99.1 degrees.  Well, that was just a precursor to the worst flu I’ve had in years.  I got a flu shot, but apparently it wasn’t very effective this year.  With all the people at Disneyland/Great Adventure and the Rose Bowl, I’m sure I picked up the flu bug there.  I had a fever of 103.3 for a night, and over 101 for several days.  And then I got a cough which I still have, although it’s getting much better.  Not the way I wanted to start 2016!

When I was finally able to go to work, it was to unpack my office – my staff and I moved locations while I was home sick.  I’m finally starting to feel settled at work, and we love our new space.

At my appointment with Dr. P last week, I asked her if taking Vitamin D would help with my muscle aches.  I also asked if I should contact my PCP about switching out one of my high blood pressure meds, as was suggested by Dr. S’s consult with the nephrology doctors, to help with my low magnesium.  So now I’m taking Vitamin D and I’ve changed one of my meds.  This week I’ve had my usual bout of diarrhea.  I also had a terrible headache on Monday, and I’ve had terrible muscle aches.  I know the Vitamin D, if it’s going to help, will take a few weeks to kick in.  But I decided to look up the side effects of Herceptin again, because I’ve obviously forgotten.  First 3 side effects?  Diarrhea, headache, muscle aches!  So I guess this will continue until at least May.  I think I’ll take Imodium every night for a week after my next infusion to see if that helps with the diarrhea; I can take Advil for headaches and I’ll hope the Vitamin D helps with the muscle aches (Advil helps with that).

Here’s to 2016!

 

One Year Later – December 15, 2015

Today is the one year anniversary of my breast cancer diagnosis.  What a year it’s been.  I’ve had:  2 breast MRIs, 4 echocardiograms, 1 blood infusion, 16 rounds of general chemo, 7 rounds (and counting) of targeted chemo,  and 30 radiation treatments.  I won’t even begin to count the number of blood draws, Neulasta shots, and stool samples I’ve endured.  It’s been worth it, though, right?  To be able to say I’m cancer free?  I know the docs won’t say it for another 4 years, but I’ll say it.

I had chemo last Thursday.  I had to move it from Friday because Friday was our office holiday party.  The treatment before, on November 20, was the exciting one.

Because I’d had a positive test for C. Difficile, even thought I’d been treated, the protocol until I had a negative result was that I needed to stay away from other chemo patients and be given my infusion in an isolation room.  The problem is that the Palo Alto facility isn’t yet equipped to do this, so I had to be given my infusion in an exam room.  Thus they had to free up a room, which meant they had to change my appointment from 2 pm to 4 pm.  Exam rooms aren’t nearly as comfortable as the lounge chairs in the infusion center; there’s no music, no juice or crackers – you get the idea. Oddest infusion ever.  I had to give another stool sample to be tested, and fortunately it was negative.  So my infusion on the 10th was back in the infusion center.  I missed it.

I got Herceptin and…you guessed it – magnesium.  My mag remains stubbornly low at 1.4-1.5, so my quick hour long infusions are now 3 hours from beginning to end.  Oh well.  At least there are few side effects – just the ever present diarrhea.

Which leads to my latest problem – the worst hemorrhoids ever. And of course I would get them when I’m going to the Star Wars marathon – all 7 movies in one sitting.  I’m contemplating getting a doughnut to sit on, although what I’d really love is a heating pad. The heat seems to help the pain – at least it did last night.

My next infusion was supposed to be New Year’s Eve, but we will be in southern California to watch my beloved Cardinal take on Iowa in the Rose Bowl.  So I’ll have my next infusion on my first day back to work on January 4.

For now, though – May the Force Be With You!